Stanford Scientists Will Monitor His Health to Help Ensure Success
ANAHEIM, Calif., Aug. 31 /PRNewswire-USNewswire/ -- Starting Monday September 3rd at Disneyland, ultra-runner and endurance coach Tim Borland will run a full marathon each day for 63 consecutive days in 63 communities to bring attention to a deadly children's disease. His "A-T CureTour" -- a partnership with the non-profit A-T Children's Project -- will take him across the country, ending on Nov. 4 with the New York City marathon.
Borland's goal is to raise awareness and money for research that will benefit children with ataxia-telangiectasia (A-T), a rare genetic disease that has no cure. A-T causes the relentless loss of muscle control due to brain cell death; like four diseases in one, A-T combines symptoms of cerebral palsy, muscular dystrophy, cystic fibrosis and cancer. Children with A-T have vibrant minds trapped inside of deteriorating bodies.
Borland says he was inspired to do the A-T CureTour by the children he's met with A-T, in particular his friend Cathryn Achilles, a 16-year-old with A- T from Hollister, Calif., whose spirit has been undaunted despite the debilitating and incurable disease she struggles with each day.
"When I first met Cathryn, I thought to myself, here is a teenage girl living with this terrible disease that has no cure," said Borland. "Her peers are out driving, playing sports, and dating, yet Cathryn is as happy a human being as you will find. That inspired me to do something."
Borland first began running in 1998 to lose the weight he had gained working in the food-service industry. Since then, he has completed 25 high- endurance racing events including marathons, a full Ironman triathlon, a 24- hour race and an ultra-marathon.
"The challenges I will face in running these marathons pale in comparison to those faced by the families who run the daily 'marathon' against A-T," Borland said.
Those challenges will be studied by scientists from the Human Performance Lab at Stanford University throughout the Tour. They will monitor him throughout the tour through a Zephyr BioHarness strap he will wear on his chest, which will record the electrical responses of his heart (ECG) and heart rate, breathing rate, skin temperature and movement-acceleration patterns of each marathon day. He will upload the information electronically so that the researchers can evaluate the physical stressors of each marathon and provide feedback on his pace, food intake and other components that will help him maintain optimal performance and health.
Stacy Sims, exercise physiologist at the Stanford Human Performance Lab, says "monitoring his heart responses, respiratory rate, and recovery, will allow us to minimize the damage to Tim's body. From a research perspective, gathering this type of data over an extended period of time will give us insight on the impact on his bones, ligaments, tendons, and muscles. Also, we will monitor and record his heart responses in real time, something that has not been documented over this type of running and duration before."
The A-T Children's Project was founded by Brad and Vicki Margus, who have two children with A-T. The project raises awareness and funding for research and clinical trials that will benefit all children with A-T. To date, the project's research has led to the development of treatments for A-T symptoms, including feeding tubes and immune therapy, as well as gaining a deeper biological understanding of how a mutated A-T gene causes many severe problems.
"When Jarrett and Quinn were diagnosed, Vicki and I quickly realized that research on A-T was limited and really needed to be expanded, not just for our boys but for other families as desperate as we were to help their kids with A- T," Brad Margus said. "We started the A-T Children's Project to focus on a simple mission: accelerate research, provide hope, and find a cure."
While scientists estimate one in 40,000 babies is born with A-T, it is not known exactly how many children out there have A-T because the disease is often misdiagnosed. Dr. Howard Lederman of the Johns Hopkins Children's Center believes learning more about A-T could lead to advances in other more common diseases as well. "A-T's shared traits with Alzheimer's, Parkinson's and many forms of cancer suggests that better understanding about A-T could reveal more about those diseases as well."
For Brad and Vicki Margus, nothing less than finding a cure will be a success. "Kids and families are counting on us and we won't give up until we do."
To view a complete list of A-T CureTour stops, visit http://www.ATCureTour.org.
About the A-T Children's Project
The A-T Children's Project is a nonprofit organization formed to raise funds to support and coordinate first-rate biomedical research projects, scientific conferences and a clinical center aimed at finding a cure or life- improving therapies for ataxia-telangiectasia. To learn more about the A-T Children's Project, visit http://www.atcp.org.
About ataxia-telangiectasia (A-T)
A-T is a progressive, degenerative disease that affects a startling variety of body systems. Children with A-T appear normal at birth, but the early signs of the disease usually appear during the second year of life. A-T causes the relentless loss of muscle control, usually making children dependent on wheelchairs by age 10 and making it difficult for them to read, speak and eat. Children with A-T also have a strikingly high risk of cancer. Although considered a rare "orphan" disease, A-T may actually be much more common than we know, since many children with A-T, particularly those who die at a young age, are never properly diagnosed. There currently is no cure for A-T and no way to slow the progression of the disease. Research on A-T may help many more common diseases, such as cancer, Alzheimer's disease and Parkinson's disease. To learn more about A-T, visit http://www.atcp.org.
|SOURCE A-T Children's Project|
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